A family-centered educational program to promote independence in pediatric heart transplant recipients

Abstract

Characteristic adolescent risk-taking behavior, including nonadherence with prescribed medications, can be life-threatening for transplant recipients. Suggestions for managing nonadherence in teen recipients include providing them and their parents with adequate information about medications, talking with and listening to pediatric recipients about problems with the comprehensive regimen, and encouraging age-appropriate responsibility for maintaining health. The clinical goal of this project was to develop a structured age-appropriate educational program to prepare pediatric transplant recipients and their families for the patient's life as a responsible, independent individual. Our primary research goal was to assess patients' and parents' knowledge about critical aspects of heart transplantation and the treatment regimen with brief questionnaires before and after they received the educational materials from their primary nurse coordinator. This descriptive pre-post test study was done to assess the effectiveness of an innovative family-centered educational program among 20 pediatric heart transplant recipients and their parents at Children's Hospital of Pittsburgh, University of Pittsburgh Medical Center. MAIN OUTCOME MEASURE, RESULTS: Percentage change in children's scores on questionnaires given before and after the educational intervention ranged from -8% to 300% (mean, 64.1%). Percentage change in scores from before to after for parents ranged from -19% to 53.8% (mean, 7.2%).